I feel silly wanting to be assessed for autism

Hi,

I recently started studying counselling in an attempt to try and be a better person, someone who makes other people feel good and correct whatever it is about me that seems to make me so... I don’t know... undesirable as a companion.

As part of the process you are supposed to contemplate the events in your life that have made you the way you are and in spite of the traumas I’ve experienced I kept coming back to the realisation that I was always like that.

I used to embrace being alienated from everyone and was a bit of a ruthless know it all and now as an adult, a wife and a mother I’m different. I’m always trying my best to be welcoming, sociable and supportive but people still treat me the same. I somehow always get people’s backs up.

I recently heard a women on the radio talking about having autism and I was surprised how “normal” she sounded and the symptoms of her autism didn’t seem odd to me at all.

I’ve done online tests which all come back as having some degree of autism. My husband thought it was ridiculous for me to think I was autistic (me too actually!) but when I read out a list of traits of high functioning autism even he had to admit out of about 25 I clearly had 23 of them. The severe aspects of my personality that he doesn’t understand.

I have booked myself in to see the GP but I’m feeling silly. I’m worried they’ll think I’m just looking for an excuse for not being a nice person. I’m scared they’ll refuse to assess me. I’m also a bit scared of not being autistic after having made a fuss.

I guess I’m hoping that someone else felt the same when faced with the prospect of finding out if they were autistic? What did the GP say?

  • I made a mess of my GP appointment when I went to ask for an autism assessment referral because I became so flustered and unsure of what I was supposed to say, what she would think of me, whether she would take me seriously. 

    I remember she asked why I thought I had autism and I said "Because I think I'm weird." then I beat myself up for about a week for saying that because it sounded so dumb. She did refer me though and when I eventually had the assessment the result was Asperger's or High-Functioning Autism. (I believe the diagnostic terms are in transition at the moment and that 'Asperger's' will no longer be used.) 

    Despite my growing suspicion that I had autism, in the wait to be assessed I swung constantly between "I really hope so, it would make so much sense!!" to "This is ridiculous, of course I don't, I'm wasting these people's time.", and "OH NO, What if they say I DON'T have it?" I think, from things I've read from others on this site, most people go through this sort of doubt. It's probably natural really considering we've spent our whole lives being told things like "Don't be ridiculous, you're fine, just get on with it." 

    At the end of the assessment though, I was still blown away when she said "Yes". I asked if she was sure, maybe it was just borderline, how accurate was the test really? She said there was absolutely no doubt at all and that I ticked seven out of the eight criteria!!

    That was just in January, at the age of 44, and I'm still getting used to it and learning about it (and myself, it seems) but it does make sense. I feel 'I' finally make sense!

    If you feel as strongly as you say about it, and having read up on it, it's worth finding out one way or the other. Just for your own sake really because other than how you feel about and understand yourself, it doesn't actually change anything. There aren't really any services (although there is 'supposed to be' some sort of follow-up to help you come to terms with the diagnosis) available unless people need things like personal care, sheltered housing, or benefits. Some areas are better equipped than others though and yours may have support groups if you wanted to use them. 

    Good luck with your appointment, and if your GP is dismissive remember that you can ask to see another or get a second opinion! Not all GP's are very up to date on autism. You can also, I believe, self-refer but check with NAS about that on the helpline or on this site.  

  • I'very been considering asking for a referral since the end of last year but not plucked up courage yet. My son was diagnosed with Aspergers last year and going through the process with him and learning more about ASD has convinced me I have Autism also. Like you all the tests I've done say it's highly likely I'm on the spectrum.  Good luck if you decide to go ahead.

  • I'm not sure about your age. All I can say is that I think it is jolly sensible to get yourself assessed. The problem, you see, is, I have heard it is quite typical for the very intelligent "high functioning" ASD1 women to have a job or to participate in society and then when they turn 40-45 they start getting health issues, crash, get burn-out because they can no longer continue compensating. 

    I don't know if it is true for everyone. But what I would say is: people like me, who didn't know and keep trying trying trying trying and then finally crash, burnout etc... if you can find out you are on the autistic spectrum beforehand, you can start making adjustments and doing stuff for yourself and make your life better - before you start making yourself really unwell.

    Even if you don't tell others about your diagnosis, you know and can tell yourself that you don't stay longer than two hours at a party. You learn strategies to protect yourself more and force yourself less. You learn that sensory overload does not mean you are being a difficult person and you learn mildness and kindness towards yourself. The fact you feel like "not a nice person" sort of shows you are one, but are constantly put in a situation where you react in ways contrary to what your heart would wish.

    So, to me, if you have any doubt and it sounds like you are pretty suspicious this might be going on for you, then I think it should improve your life in the long run. 

    Don't worry about what other people might think or not think - that is their problem. You are doing this for yourself (and your husband). Put the question to the professionals and let them tell you their honest opinion and continue from there. There is no need to feel stupid. 

    And don't be put off by the ignorant few. Unfortunately some GPs still aren't in the know about different manifestations of ASD especially with women. 

  • The book "Women and Girls wirh Autistic Spectrum Disorder" by Sarah Hendrickx is well worth a read. 

  • Yeah, I felt EXACTLY that way! However, this all came after my sudden realisation that I was autistic so there were no real doubts in my mind that I wasn’t autistic but when I started to think about it, it did make me feel a bit silly and wonder if it could be true, and all the other things you mentioned. 

    However, when I went to see my gp I was very clear in my mind what I wanted, a referral,  and I simply told him. I even told him that I was autistic, which didn’t go down too well, lol, but he made the referral anyway. I just had to give him a few examples of why I thought I was autistic so he could write them on the referral form. 

    Due to over stretched services, and people going to the doctors for all sorts of things a doctor could never be expected to fix, there’s an ongoing internal battle between gp’s and mental health teams/autism teams etc so the doctor just needs to make sure that he has enough information to put on the referral form to almost guarantee it will be accepted. They don’t like to get a rejection because it then comes back to them and they have to either complete another referral form or work out themselves what’s going on for this person and often traits of autism are beyond their training. It’s a specialised area. So they just need to be sure they have enough reasons so the team will accept the referral. When I work for the NHS in mental health teams it is always a battle between accepting and rejecting referrals. Sometimes it gives  the team a bit of breathing space because they’re so overstretched and they’re trying to protect their workers and therefore the clients as much as they can but they won’t reject a referral if it has been completed correctly with all the required information. 

    So just be honest, prepare if you need to and don’t leave his room without a referral being made. Take some handcuffs if needs be ;) I’m joking but I’m serious. It can save time, hassle and heartbreak if you simply do not accept him/her not making a referral. 

    The whole process was very smooth for me although not internally! Lol! That’s a different matter. But the process of going to the gp to getting the diagnosis was pretty straight forward. 

    When I went for the initial screening assessment. The psychiatrist said to me that he’s not going to put me on the waiting list (I thought, oh no ). But he said instead he would get his lap top out, there and then and give me his very next appointment. He said the waiting list would take too long. So I actually got my actual appointment time and date given to me at my first meeting. 

    The guidelines for gp’s to follow are clearly set out by NICE. I’ll get a link for the information for you. But yeah, all of what you’re feeling and thinking, is pretty normal for most of us and it’s often just the start. So buckle up, hang on tight, you could be in for the ride of your life. I have experienced a lot of realisations, I have gained so many answers but of course it comes with a lot of loss and therefore grieving so there has been a lot of darkness as well. But I wouldn’t change a thing. Getting the diagnosis has changed my life in a way I could never have imagined. It’s been probably the best thing to ever happen to me. It gave me back my life and gave me a valid, solid place on this earth. Best of luck. 

    www.autism.org.uk/.../adults.aspx

  • What did the GP say?

    Hi, you may feel even more silly after your GP appointment.

    I had mine on Friday and was offered antidepressants 3 times.

    I took my notes and research so far, I told about my challenges and anxieties. But I’m too successful in life (Family, business and house)

    I felt like I would have to tell some really ***ty stuff about myself but probably he wouldn’t listen anyway.

    I took antidepressants only once and started to grind my teeth even more than usual so stopped taking them.

  • So basically that GP's message is: we have to wait until you fall apart until we take any action? It does sort of fit with message though I heard from a therapist: that als long as you can "function" in society these things are regarded personality traits and differences and when it stops you functioning and being productive, gives you health issues etc then it is regarded as a disability. The huge issue is here that many people with ASD1 do struggle along and try and fit in and put a huge amount of effort into blending in  (possibly collect diagnoses of ADHD, depression, anxiety etc etc along the way) and never quite get to deal with the root cause - until they possibly land in a massive burnout, when one little thing in their lives come undone...  it must be frustrating. (I might be projecting here - I was one of those people who soldiered on and kept struggling and then crashed).

  • I went through this last year. When I went to the GP, I was very direct about it. I described a situation that had happened at work and that was very distressing, and then I said I'm sure I'm on the spectrum and I want to be assessed. It might have helped that the GP was quite young (and obviously relatively newly trained and qualified). I mentioned the online tests I had done and the descriptions that match my life completely. The GP had no problem referring me, and that was in late July last year. By early September, after three assessment sessions, I had my diagnosis.

    Lots of people on the spectrum seem "normal" because they are. They are normal, ordinary people who happen to be on the autism spectrum. There is no shame in it, and to be honest, even with all the nonsense I have had to take from other people, I'm still glad to be on the spectrum. It is a part of me, and I can't imagine who I'd be if I were not on the spectrum, but I know I wouldn't be me.

    From your post, I can identify most with "getting people's backs up". I seem to have a knack for offending people without meaning to, and nobody seems to be willing to give me the benefit of the doubt or a second chance.

    Good luck with your journey.